Aa
Textbook symptoms, normal tests
Hi everyone,
I'm in pre-dx limbo and, like everyone else who posts from this state, I guess I'm just looking for a little reassurance that I'm on the right track. My symptoms started just this past February (though now I can look back and see other things over the past couple years that also could relate) with numbness down the side of my left leg. For at least two weeks the pain in my leg was so bad I would just rock and cry. The numbness travelled to my um, private parts and I got so freaked out that I ended up in the ER. The ER doc suggested sciatica and sent me for a lumbar MRI. That came back normal and he said that, of all things, because of my age and location, I really should consider MS. I thought he was crazy and went back to my GP. GP, still thinking sciatica, sent me to a neurosurgeon. He pretty much laughed at me and sent me back to GP. GP said let's try PT. By this time I had lost sensation over most of my left side and couldn't figure out how PT for my leg would help my numb arm -- so I went to the neurologist. Neurologist tested reflexes, found I had barely any on my left side and hyper on my right. He sent me for brain/cervical MRI which came back normal. In the meantime, I became more fatigued and weak and developed tremors. My skin is also hypersensitive. To his surprise, those MRIs also came back normal. As has the thoracic one he's ordered since, the nerve tests, and all blood tests. He has yet to order a LP.
Sooo...we've reached the point of "well, let's wait a few months then retest with a higher-powered machine." Trouble with that is that I'm still right smack in the middle of this horrible episode. I would assume (??) that I'll feel better at some point here...it's been over 4 months of numbness, tremors, weakness, spasicity, loss of coordination, and fatigue. Just yesterday I had to call hubby to come home from work early so he could pick up the kids from school because I was so weak, dizzy, and trembly, I couldn't stand up. And I'm just supposed to wait like this? If thats my best option, well, I'll do it. But I'm so exhausted (literally and figuratively) that just going on without answers is making me crazy.
I have already accepted that this could be MS. Frankly, it would be relief just to know for "certain". Limbo is miserable.
Does it sound to you guys like I'm on the right track? Is there anything else I should be considering?
Thank you!
I'm in pre-dx limbo and, like everyone else who posts from this state, I guess I'm just looking for a little reassurance that I'm on the right track. My symptoms started just this past February (though now I can look back and see other things over the past couple years that also could relate) with numbness down the side of my left leg. For at least two weeks the pain in my leg was so bad I would just rock and cry. The numbness travelled to my um, private parts and I got so freaked out that I ended up in the ER. The ER doc suggested sciatica and sent me for a lumbar MRI. That came back normal and he said that, of all things, because of my age and location, I really should consider MS. I thought he was crazy and went back to my GP. GP, still thinking sciatica, sent me to a neurosurgeon. He pretty much laughed at me and sent me back to GP. GP said let's try PT. By this time I had lost sensation over most of my left side and couldn't figure out how PT for my leg would help my numb arm -- so I went to the neurologist. Neurologist tested reflexes, found I had barely any on my left side and hyper on my right. He sent me for brain/cervical MRI which came back normal. In the meantime, I became more fatigued and weak and developed tremors. My skin is also hypersensitive. To his surprise, those MRIs also came back normal. As has the thoracic one he's ordered since, the nerve tests, and all blood tests. He has yet to order a LP.
Sooo...we've reached the point of "well, let's wait a few months then retest with a higher-powered machine." Trouble with that is that I'm still right smack in the middle of this horrible episode. I would assume (??) that I'll feel better at some point here...it's been over 4 months of numbness, tremors, weakness, spasicity, loss of coordination, and fatigue. Just yesterday I had to call hubby to come home from work early so he could pick up the kids from school because I was so weak, dizzy, and trembly, I couldn't stand up. And I'm just supposed to wait like this? If thats my best option, well, I'll do it. But I'm so exhausted (literally and figuratively) that just going on without answers is making me crazy.
I have already accepted that this could be MS. Frankly, it would be relief just to know for "certain". Limbo is miserable.
Does it sound to you guys like I'm on the right track? Is there anything else I should be considering?
Thank you!
I would also encourage you to get thoroughly checked out for Lyme by a Lyme Literate Medical Doctor (LLMD). Just as every MS patient has their own presentation and progression of MS, so do Lyme patients.
My Lyme mimiced MS, and what delayed my diagnosis even further was testing negative twice, once on a blood screening test and once in my CSF. Four doctors told me I couldn't have Lyme because of those results. Never mind that I was the sickest I had ever been in my life, was beginning to fear for my life, and they had no alternatives to offer me except Vicodin. (Note: I had some tingling in my right rear and leg that would also travel to my privates. Not something I wanted to talk about!)
Lyme is ultimately a clinical diagnosis with testing to support it, not to determine it. I even tested negative on the DNA test at the specialty lab in CA (IGeneX) and I STILL have Lyme. (I did test diagnostically positive on their Western Blot.)
Lyme doesn't like to live in the blood where the body recognizes it as foreign and makes antibodies to attack it. It prefers organs and tissues, the brain and nerves. When there isn't much of it left in the blood, the immune systems reduces its antibody production, sometimes low enough not to show up on tests.
A Western blot from IGeneX could be very helpful. They report Lyme specific antibodies that the CDC surveillance criteria ignore. There is also a new commercially available Lyme culture test at ALSI in PA that could be useful for people who otherwise test negative.
You are welcome to post on the Lyme Forum...there are many stories there of people struggling to get diagnosed and treated.
My Lyme mimiced MS, and what delayed my diagnosis even further was testing negative twice, once on a blood screening test and once in my CSF. Four doctors told me I couldn't have Lyme because of those results. Never mind that I was the sickest I had ever been in my life, was beginning to fear for my life, and they had no alternatives to offer me except Vicodin. (Note: I had some tingling in my right rear and leg that would also travel to my privates. Not something I wanted to talk about!)
Lyme is ultimately a clinical diagnosis with testing to support it, not to determine it. I even tested negative on the DNA test at the specialty lab in CA (IGeneX) and I STILL have Lyme. (I did test diagnostically positive on their Western Blot.)
Lyme doesn't like to live in the blood where the body recognizes it as foreign and makes antibodies to attack it. It prefers organs and tissues, the brain and nerves. When there isn't much of it left in the blood, the immune systems reduces its antibody production, sometimes low enough not to show up on tests.
A Western blot from IGeneX could be very helpful. They report Lyme specific antibodies that the CDC surveillance criteria ignore. There is also a new commercially available Lyme culture test at ALSI in PA that could be useful for people who otherwise test negative.
You are welcome to post on the Lyme Forum...there are many stories there of people struggling to get diagnosed and treated.
Thank you also for your welcome! It must be so frustrating to watch your child go through all this! I have a son with autism and let me tell you, I know how navigating the healthcare system can be such a nightmare!
It is an encouragement to find this forum to at least hang out a little bit while I wait. It is also encouraging to hear that there may be things to help my symptoms in the meantime. While I'm certainly not thrilled at the idea of being on any meds, especially without a clear dx, it's tough trying to get through this time with no relief.
Thank you, again, for your reply -- best of luck to you here in Limbo!
It is an encouragement to find this forum to at least hang out a little bit while I wait. It is also encouraging to hear that there may be things to help my symptoms in the meantime. While I'm certainly not thrilled at the idea of being on any meds, especially without a clear dx, it's tough trying to get through this time with no relief.
Thank you, again, for your reply -- best of luck to you here in Limbo!
Hi! Thanks for the the reply! I guess I should clarify on the reflexes...my right leg has always (through my adult years, at least) been ever so slightly more "hyper" than the left, but until recent months, my left was also somewhat "hyper". I recall many an occasion of kicking an unsuspecting dr in the stomach! You're right, it's very strange. I think my neuro thinks so too because every time I see him he rechecks...and shakes his head. Every time!
It seems so far he has been working hard to check the MS angle and hasn't really pushed for ruling/checking out the mimics. I'm not sure why. I guess that's why I asked about the negative tests...because every time one returns negative he a) seems surprised and b) wants to keep testing. I know I would be very surprised to be dx with Lyme because I can't imagine how/when I would have been exposed. My sister-in-law and her mom both have Lyme and their symptoms are a little similar, but still different...but I know symptoms vary even within a dx.
Anyway, thank you for the welcome! I'll keep digging around and lurking here in the meantime!
It seems so far he has been working hard to check the MS angle and hasn't really pushed for ruling/checking out the mimics. I'm not sure why. I guess that's why I asked about the negative tests...because every time one returns negative he a) seems surprised and b) wants to keep testing. I know I would be very surprised to be dx with Lyme because I can't imagine how/when I would have been exposed. My sister-in-law and her mom both have Lyme and their symptoms are a little similar, but still different...but I know symptoms vary even within a dx.
Anyway, thank you for the welcome! I'll keep digging around and lurking here in the meantime!
Thank you for the welcome! I see the neuro again in a couple weeks and will definitely pursue something for the current symptoms. I'm hoping there is something that will help.
I went over and read a bunch of Pages yesterday -- such helpful information! Thank you!
I went over and read a bunch of Pages yesterday -- such helpful information! Thank you!
You are so correct when you say Limbo Land is no fun. It sure isn't but over the past 1 1/2 years I have come to understand maybe why the slow course to diagnose. My son is now 13 yr old and has every symptom of MS and the lesions, abnormal reflexes, physical features, cognitive features, bladder issues (the list goes on and on) etc... They have even documented "highly probable MS" but no solid diagnosis. He is getting treatment for the symptoms but not MS meds. I can't begin to tell you how many tests were done to rule out every other illness. They took a very long look at Lupus and Lyme. It mimicks MS so much and I know people who are very ill from Lyme. We went as far as to get the DNA test done for Lyme and sent off to some lab in California. I was so angry and frusterated for so long but I have been on this forum since the beginning of his illness and over time I have grown to realize (although frustrating) I want them to take their time and not be hasty in an MS diagnosis. The medications for MS can help but they are not real fun. I want them to take to make sure because a diagnosis of MS changes a lot of things and I want the right treatment. I do think you should pursue any treatment that would make these symptoms better for you while still looking for the cause. A higher resolution machine and an LP is a good start. We did the testing and then we did seek a second opinion from MS Specialist after results were in from first Neuro. We now see both of them every 3 months or more if we need them. The MS Specialist says she will continue to see him until he is well into adulthood (hmmm...somewhat confusing statement). He has tried medication to help with nerve pain (Neurotin, Lyrika, Dilantin) and they do help a little. Maybe they can help treat your symptoms so you feel better and continue on this quest. Don't give up and hang in there. Keep calling and letting them know what is happening to you. Keep a journal-it has proven very helpful. They may not diagnose anything yet but surely they can help your symptoms. You will get great advise and support from here. They have saved my sanity many times and there is so much knowledge here. Welcome! I am sorry you are here but glad to meet you. Wishing you the best!
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Hi and welcome to our little corner of the web, i also think you might find our health pages on MS helpful to you, you'll find them just to the right of your screen.
To be honest i'm not really sure if MS would be at the top of the list of possibilities, though i dont really have a clue at other conditions that would fit. My reasoning is "Neurologist tested reflexes, found I had barely any on my left side and hyper on my right" typically hyper-reflex is commonly found in pwMS but your saying you have both hyper and hypo and i cant recall that scenario before, so its making me wonder if it's not something else, i'm kinda sitting on the fence, sorry!
I'm sure someone will let us know if this is the same for them, thankfully we're pretty open about correcting erronous thoughts ;o) anyway have a read of out health pages to get some ideas of mimics etc.
Cheers...........JJ
To be honest i'm not really sure if MS would be at the top of the list of possibilities, though i dont really have a clue at other conditions that would fit. My reasoning is "Neurologist tested reflexes, found I had barely any on my left side and hyper on my right" typically hyper-reflex is commonly found in pwMS but your saying you have both hyper and hypo and i cant recall that scenario before, so its making me wonder if it's not something else, i'm kinda sitting on the fence, sorry!
I'm sure someone will let us know if this is the same for them, thankfully we're pretty open about correcting erronous thoughts ;o) anyway have a read of out health pages to get some ideas of mimics etc.
Cheers...........JJ
Can you call your neurologist and ask for treatment? Many neuros like to wait for subsequent flares to make the diagnosis, but it sounds like you're still experiencing one. Sometimes these flares can last many weeks.
BTW, Welcome! Do have a look at our Health Pages (links on right side of page), while you're waiting, and keep in touch.
BTW, Welcome! Do have a look at our Health Pages (links on right side of page), while you're waiting, and keep in touch.
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